Why Don’t You Take A Few Days To Get Away By Yourself?
This rhetorical question always trips me up. I appreciate the sentiment and know people who make this comment are just trying to help. I always wonder if those who ask me that question live in a non special-needs world and if this is something I truly need to address to begin to cultivate an understanding for those who live in a much simpler world than I do?
I Know It’s Not Just Me
First of all, I have the most present, supportive, loving, and helpful family as anyone could have. Still, it’s extremely hard for even me to find time and resources to ‘just get away’ for a few days. This past year, I’ve had 2 nights off. Yes, two, and not consecutively.
Many families don’t have family and resources. They can’t ‘just’ get away for a break. It will never be that simple.
Can Jessica’s Dad Help?
Yes. He can, he has, and he will. During the pandemic, dad had to continue to work and go to the office every day. That meant constant exposure potential. We made the choice to not continue Jessica’s visits at his house during that time. Also during that time, he has been mostly working 7 days a week.
Things are beginning to settle down for him, and he and Jess have both now had their vaccines. We hope to start back Jessica’s regular visits to his house soon.
Can Nonnie & Granddad Help?
Yes. They can, they have, and they will. During the pandemic, we made the decision to discontinue visits to their house to help protect Nonnie & Granddad, who happens to be in an extremely high risk category.
Now that they and Jess have had their vaccines, we hope to start back Jessica’s regular visits soon. But for now, Nonnie is recovering from a partial knee replacement and it’s not the right time for Jess to start back with her independent visits there yet.
Can Hannah Help?
Yes. She does and will continue to do so. Hannah is a huge help. However, Hannah works full-time during the week, and often needs the weekends to recover due to some lingering issues from a major illness 10 years ago.
What About Marlow, Jessica’s Caregiver?
Marlow helps with Jess during the week. It is her job, and it’s not an easy one. It’s quite mentally taxing, and pushing them together for extra time is a risk of over-exposure, and not a risk I am willing to take.
Getting Away Is Not Just About Finding Resources
It’s difficult to let go even when resources are available. When Jess was younger, if I left her at home with her dad to go to the grocery store, to run errands, to go to dinner, etc., Jess was hysterical and convinced that I would never return. It’s traumatic, not just for her, but also for dad and anyone else that’s around, as well as for me.
After Jess was able to have her own phone, she could, and did, call and check on me. Constantly. Like 10, 15, or 20 calls/conversations in a row. This means whatever outing I’m on is not really much of a getaway.
Who is ‘Qualified’ to Help?
This answer is directed to those who live in the non special-needs world. Please accept that it’s nearly impossible to understand the full picture. Again, it’s not a criticism. There is no way to understand the full picture without living it day in and day out. With Jess, for example, since she is seen in videos all the time, one might think her needs are easily understood and that keeping her for me is not a big deal. I promise that for all of the little intricacies you think you know, there are 100 you don’t.
Do you know why? Communication. Jess has a communication disorder. I speak her language but few do. What I’m saying is. I make it look easier than it actually is.
What I’m saying is, I make it look easier than it actually is.
When Jess is struggling or anxious about something and can’t communicate with someone who understands what’s going on, it’s meltdown city. There are few people who I want to subject to that.
What’s My Point?
This post is part of my ongoing effort to help develop a deeper understanding of the world families like ours live in. My point here is to explain why it is challenging for most special needs families to arrange extra help to ‘just get away’ for a few days.